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Old 24-08-2018, 10:14 AM
Dingo Dingo is offline
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Default Scott's Vertebral Body Tethering Thread (Fusion Alternative)

Because of the length of this post I'm going to have to split it into multiple posts to make it work correctly.

I'm not sure if this is available yet in Australia & New Zealand but hopefully soon if it's not.

Scott’s History
2007 - Age 4 - Rib hump noticed but scoliosis not measured
2008 - Age 5 - 11 degrees
2009 - Age 6 - 14 degrees
2010 - Age 7 - 19 degrees (Torso rotation exercises began just before 7th birthday)
2011 - Age 8 - 20 degrees
2012 - Age 9 - 20 degrees
2013 - Age 10 - 19 degrees
2014 - Age 11 - 21 degrees
2015 - Age 12 - 24 degrees
2016 - Age 13 - 24 degrees
2017 - Age 14 - 28 degrees
2018 - Age 14 & 5 months - 35 degrees - Flew to San Diego the following week and X-Rayed/remeasured by Dr. Newton at 45 degrees
2018 - Age 14 & 10 months - 55 degrees, surgery scheduled
2018 - 4 weeks later, the day before surgery - 63 degrees
Two weeks after surgery - 28 degrees

Last edited by Dingo; 24-08-2018 at 10:59 AM. Reason: Removed Dr. name
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Old 24-08-2018, 10:15 AM
Dingo Dingo is offline
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Default Re: Scott's Vertebral Body Tethering Thread (Fusion Alternative)

Results Of The Surgery:
Scott’s curve was reduced from 63 degrees to 28 degrees post-surgery. You can see his before and after X-Rays here. He woke up one full inch taller. Although it wasn’t reported to us Scott’s mother and I estimate that his rotation was reduced by roughly 50%. This is a picture of his back three days after surgery. For reference this is a picture of Scott in June 2018. His rib hump had become plainly visible even through clothing. We don’t know if this amount of improvement is typical but as a parent it is astonishing and we are grateful that this technology exists. Scott’s X-Rays indicate he is a late bloomer and his spine should grow until sometime after his 18th birthday. The tethers will create extra pressure on one side of his vertebrae which will cause that side to grow relatively slower. This should lead to a progressive correction of the curve. It is also possible that his rotation will continue to improve. After Scott is finished growing the cords shouldn’t need to be removed. However they can be removed if for some reason that becomes necessary. Although the results are extremely encouraging there are no long-term studies on VBT. Less than 1,000 of these procedures have been performed.
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Old 24-08-2018, 10:15 AM
Dingo Dingo is offline
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Default Re: Scott's Vertebral Body Tethering Thread (Fusion Alternative)

After The Surgery:
Because a picture is worth a thousand words these five images (seen here) may tell the story best.

Day 1) Scott spent most of the day laying down and resting. He was tired and sore. He ate barely anything. He got up twice and sat in a chair. This is a video of Scott being rolled out of bed for the second time.

Day 2) This was the high point for Scott’s surgery pain. He didn’t want to eat very much. He managed to walk around the hospital but wasn’t in a good mood.

Day 3) His pain had subsided from the day before. He threw up once in the morning. The uncomfortable chest tube was removed around lunchtime and within a couple of hours he started to feel much better. This is a video of him walking through the hospital and down the stairs. His appetite began to return.

Day 4) The worst of the pain was gone and he was much happier. He was discharged from the hospital.

Day 5 through Day 13) Scott stayed in San Diego, California until his 2 week checkup with the surgeon. Each day he felt better and his pain level dropped to a 0.5 on a 0 – 10 scale. This is a video of Scott walking outside his hotel room 9 days after surgery. On day 13 the bandages were removed which revealed a sticky mess and 4 incisions on Scott’s right side. You can see a picture of that here. The blotchy, red skin was due to the bandages being taken off. It went back to normal in about 15 minutes. After he took a shower most of the goop was gone.

Day 14) Back to school! This is a picture of Scott yesterday morning with his brother before classes.
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Old 24-08-2018, 10:16 AM
Dingo Dingo is offline
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Default Re: Scott's Vertebral Body Tethering Thread (Fusion Alternative)

Restrictions After Surgery:
For the first 90 days after surgery Scott has to wear a small back brace (you can see it here). He wears it during all of his daily activities and to be honest he doesn’t mind. Fortunately he doesn’t have to wear it at night to bed. We’re going to take it easy during the first 6 week period to make certain that all of the hardware implants firmly. No heavy back-packs or lifting/twisting/rough-housing, etc. etc. We can do weight training after 6 weeks but nothing too heavy or rough. After 90 days Scott can do pretty much anything but we are going to remain extra careful. No back flips or 300 pound squats until after he’s done growing. If Scott loosens a screw or more likely snaps a cord he’ll need another surgery. No thanks!

Checkups After The Surgery:
For at least the next 2 years we will fly to San Diego, California every 6 months for an appointment with his surgeon

Why Didn’t We Do VBT When Scott Was At 45 Degrees?
Scott was a late bloomer. His spine was too immature and too much unpredictable growth remained. This can potentially result in overcorrection and additional surgery or a generally less favorable outcome. Five months after his initial consultation his body was ready and we scheduled surgery. Unfortunately his curve progressed at an ever increasing rate and at 63 degrees he barely made it. If the curve had progressed another 10 degrees over an additional month tethering may not have been an option.

Why Did We Choose Tethering?
We chose tethering because it bought us time. Modern fusion may be a fantastic, best choice for many kids but there is no turning back after the procedure is done. Even if tethering turns out to be less than perfect it keeps our options open. When I was a little kid my family had 1 corded phone in the kitchen, a black and white TV, no VCR and no microwave oven. Technology never stops improving and in 20 or 30 years scoliosis may be easily fixed with smart materials or some other device/procedure we can’t imagine today.

Can This Surgery Work For Adults?
There are no long-term studies on this procedure. My sense is that nobody knows yet. Remaining growth plays a significant role in correction so it’s possible that the hardware or procedure itself would need to be modified for adults. This may take many years of research and testing to determine.

Can Someone Get Fusion If Tethering Fails?
Yes.

Can The Cords Break?
Yes. They can and do break. Over a long enough period of time they may all break. That shouldn’t be a problem after growth is complete because the spine will have remodeled into a healthy shape.

Did Anything Unexpected Happen?
Yes. You may notice in the videos that Scott tilted his head after surgery. In addition he stood crooked. This was because his brain had adapted to work with a scoliotic spine. It took about 10 days post-surgery for his nervous system to adapt and these symptoms went away. He practiced walking while he looked in a mirror which helped quite a bit.

Scott’s Rotation Exercises
From Scott's first measurement at age 5 until age 7 his curve progressed from 11 to 19 degrees. The persistent worsening of his condition was extremely concerning and a few weeks before his 7th birthday we began the rotation machine exercises documented in this thread. During the next 4 years of steady growth his curve remained stable between 19 and 21 degrees. This was the same positive outcome documented in the studies and I began to think we had beaten his scoliosis. Unfortunately after that point the curve began to slowly progress. Despite our continued effort his curve went from 21 to 28 degrees over 3 years. The exercises may have helped but at this point not enough to stop progression. After age 14 the rotation exercises didn’t appear to help at all. He progressed from 28 degrees to 63 degrees in one year. Ouch! I am glad we did these exercises because they appear to have halted progression for 4 full years. At 63 degrees and 10 degrees progression per month Scott had his tethering done at almost the last possible hour. Torso Rotation exercises likely bought him just enough time to get over the finish line at the buzzer. Going forward Scott will no longer do these exercises because we want the screws to firmly implant into his vertebrae. After that happens there is probably no need because natural growth over the next 3 years will power the correction further.
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